Monday, September 22, 2008

About Us

My name is Erin, I am a stay-at-home mom to four beautiful children. However, the reason I am here posting is because of my 3rd. I am very excited to get to know you and your little ones! I truly look forward to sharing ideas and learning from you as I am sure you have so much to learn from!Up to delivery I had a very normal pregnancy. I went into labor 3 weeks early; I labored through the night at home but early on a Sunday morning I started to have some serious problems. We rushed to the hospital to find out that her heart rate dropped into the 60’s and mine was well above 100, 45 minutes and an emergency C-section later my little 5.5 pound baby girl was here. I did not hear her cry, and overheard a nurse say that the NICU nurses were working on her…what was I supposed to think?A few hours later I was holding her and talking with the doctor about how despite her rushed delivery she was fine; she was small because the umbilical cord had been dying for quite sometime and she was not getting the nutrients she needed… she was very hungry! The cord was also wrapped around her neck but did not cause any oxygen problems. We are just glad she did not drop down into the birthing canal because she would have choked. We took Bree home after the three days and all was fine for a few months.I started noticing she was not rolling, sitting, crawling or walking when she “should” have been. I am not the kind of mom to worry about “late” starts. I believe children will do thing in their own time, but I did feel I needed to talk to her pediatrician about it. He shared my same belief but just to be on the safe side we deiced that x-rays to see the bones would be a good idea. All came back perfect, and I dismissed her delays as just her not being ready. The pediatrician wanted to keep “a close eye on it”.A month after x-rays we started to see that she was really posturing her toes and hands (meaning curling her toes under and fisting her hand very tight). She was tested for the early intervention program and started working with a few therapists. They suggested a possible stroke at birth could be the cause for her right side weakness. As it would happen we had an appointment the next day for her well-baby. I brought that up with the pediatrician and he thought it would be best to rule it out.So down to Primary Children’s for easily the worst day of my life; Bree went in for an MRI and they had to sedate her. I had to hold her for the IV and then as soon as she was out they put her in a room where I could see and hear her but not go to her. She is a fighter; she ended up needing and extra dose of medication. They finished that up fairly quickly and then we just waited for her to wake up to take her home. It was very hard for me, and of course all of the “what-ifs” flooded my mind. We waited for a phone call for the next few day, and when we did not hear anything for 3-4 days we thought no news would be good news. So, when I got the call from the doctor saying they found some abnormalities I bawled.Bree got in to see the neurologist with-in 2 weeks (amazing for a specialist we know) and he explained that she has schizencephaly or schizenocephaly. It is an extremely rare developmental birth defect that occurs somewhere between 18-22 weeks gestation. It is best described as abnormal slits, or clefts, in the cerebral hemispheres of the brain. I have I have scanned a picture I drew (with my limited art ability) to help better explain it…What does all of this mean? I do not know, I am still a bit overwhelmed by the whole thing. She has been diagnosed for about 3 weeks and I am still learning a lot. I have been told Bree will have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. She only has it on one side (unilateral clefts) and that is why she has a weakness on one the right side of the body. We will have to watch for seizures, vision loss and hearing loss, but because those things have not happened in the first year of her life, the chances of them being a problem are much less.We are hopeful she will be able to be mainstream as far as her schooling goes, but of course we will do whatever is best for her.She is doing great currently; she has started to take a few steps without her walking and can clearly say 3 words. She is really picking up on sign language, and her social skills. Her mood swings can be abrupt but not too bad… I hope we can keep it that way.Again, I am looking forward to your thoughts on schooling, sibling interaction, helping her to use her strengths to her advantage … really any advice you might have.I have an AMAZING family and friend support, but this blog is just different, and I am so relieved to be able have this kind of outlet!

7 comments:

Welcome! I'm so glad you've joined us here. Being that your daughter's diagnosis is so fresh, I praise your for your ability to confront it and talk about it so early on. I know it can be hard, but we're all here for you just like I'm sure you'll be here for us. I've never heard of Bree's condition before--it'll be interesting to learn about it with you. Thanks for sharing your story with us...I hope you feel right at home here. I look forward to hearing more from you Erin!

Welcome Erin! We're so glad to have you here. Your little Bree's story sounds a lot like my daughter M.K.'s We started looking into things when she was doing what she was "supposed to do." off to Primary's for MRIs and other tests. Only our diagnosis was Cerebral Palsy. It sounds like their symptoms are quite similar though too -- delays in speech, walking, and other physical things. Perhaps we can learn from each other. :)

Welcome to Holland! :) I use this blog as an outlet too. A place where I can share my bad days as well as my good days. My family doesn't want to hear about the bad days. Thanks for sharing your story. I don't really have any advice for you because my son has no real diagnosis but his issues aren't physical. He seems like he may have a mild form of Autism.We watch Signing Time (or used to) a lot and we still love it. I hope signing helps Bree and you. :)

My son Dillon has unilateral open lipped schizencephay. He is also blind in his right eye due to the optic nerve developing in utero also. He was diagnosed at PCMC when he was 10 months old, he is now 3 1/2. We live up in Logan, Utah. If you have any questions or just want to chat please email me. Erica74@cvbband.com.... hope to hear from you soon, erica

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Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.Karma KM 2500 Wheelchair

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